Shining a Light on ALS

Amyotrophic Lateral Sclerosis (ALS) once had baseball great Lou Gehrig as its namesake. Today, people who look like him – middle-aged white men – continue to appear in informational materials about the disease.

Assistant Professor at Yale School of Public Health Chelsey R. Carter found it difficult to identify people of color and younger adults who suffered from ALS. Volunteering as an assistant caregiver in ALS patients’ homes as a teenager, she wondered aloud: “What’s going on? People who look like me aren’t here.”

“This is a terrible freakin’ disease, so I don’t want to see people in this space,” Carter said. “But it also made me ask why they were not showing up. Race isn’t biology, so if this disease can impact anybody, everyone should be showing up and getting the care they should receive.”

It’s still a challenge, she said. Although the debilitating, incurable nervous system disorder affects people from all backgrounds, Carter said systemic inequities, racism and age discrimination, including of younger people who traditionally were not thought to be at risk of ALS, have contributed to a lack of resources for those in historically marginalized groups.

A new grant from the ALS Association will give Carter and a team of researchers the opportunity to change that. With $50,000 in funding, Carter aims to combine her lived experience as an assistant caregiver with her training in ethnography and community-based participatory research to interview caregivers for ALS sufferers from underrepresented backgrounds to get a more nuanced picture of the disease across race, age, and geography.

Carter plans to focus on younger people with the disease including those in their 30s and 40s. Hearing their stories can help to illuminate hidden corners of the disease, she said.

“One of the things that’s really powerful about this particular grant and what we learn from it is that while ALS has been statistically modeled to only impact people as they’re getting older, we’re seeing more and more people getting ALS at young ages.”

Her team hopes to collect quantitative and qualitative data from clusters of caregivers in all regions of the U.S., and to do interviews, shadowing, and focus groups to learn more about caring for the disease from an ethnographic lens. Caregivers are important for this project in many respects, she said.

“If Black people affected by ALS do exist, then our best bet is to understand what’s happening with their caregivers and the interactions between their caregivers,” she explained.

Beyond the association with Lou Gehrig’s name, Carter pointed to other instances in which structural inequities harmed the ALS population. Promotional materials from nonprofits related to ALS often fail to highlight Black and young people. The horrors of historical clinical experimentation on Black people and current anti-Black medical gaslighting have contributed to an imbalance in those seeking and receiving care, she said. In an article published in Feminist Anthropology, Carter detailed the extent of medical gaslighting in the ALS population.

Historically marginalized individuals who suffer from ALS and caregivers may face multiple threats: Structural oppression Black people encounter in the broader medical system, combined with implicit biases from health care providers and anti-Black cultural norms often leave their medical needs unheard and unmet, she said. These factors mean that Black people affected by ALS can be kept from being diagnosed or receiving treatment – a “gaslighting” of their lived experiences – which can have major implications for their ability to get adequate medical care and social support.

In 2020, the ALS Association committed to “erase the disparities that exist for people with ALS of different races, ethnicities, and socio-economic circumstances.” But Carter said the organization has a history of furthering representational harms.

“They are very complicit in making ALS appear to be a white man’s disease,” she said. “They were propagating this idea that unless you were older, white and a man, you aren’t going to get ALS, according to their website and CARE database. But that’s not how diseases work.”

Associate Professor of Public Health Joan K. Monin, the grant’s co-principal investigator, said this research has wide implications for health care, not just for those with ALS.

“By understanding the challenges that Black individuals living with ALS and their caregivers are facing and the strengths they bring to the table, we will be able to provide guidance on how to improve health care systems and community resources,” Monin said. “When we address the needs of families whose needs have been overlooked, everyone is likely to benefit.”

Added Carter, “[ALS] doesn’t just impact the aging white population. I believe the assumption that it does is the reason we’ve been so slow to figure out a cure.”